Kian’s Story

kian 2

Kian lived in the United Kingdom and had 5 battles with ANE. Kian’s mutation in Ranbp2 was de novo (not inherited). He was not diagnosed with ANE until his 4th attack, showing how under recognised & misdiagnosed Acute Necrotizing Encephalopathy really is. Read how very, very brave he was and how ANE has affected his family.

#RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #ANEC  #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu  #ParentsToAnAngel


Find out more details at:


We are on social media, you can follow us at:






Please visit our  ANE Awareness Store

New Project (41)

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.